May 2025 BSTG meeting notes
Published 6 June 2025
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Members of the Blood Spot Task Group (BSTG) met on 29 May.
Update on projects
A paper, by the Sheffield Centre for Health and Related Research (SCHARR) identifying challenges, opportunities and practical approaches when developing modelling for rare diseases, was submitted for publication in autumn 2024 but not accepted.
It has now been redrafted and will be submitted to a different journal in June 2025.
Another manuscript being finalised prior to journal submission relates to the project on test accuracy study designs and suitability for rare disease settings. This project concluded that further work is necessary to explore how best to assess test accuracy in newborn and rare disease settings. This additional piece of work is being developed by the National Institute for Health and Care Research (NIHR) Warwick/Birmingham evidence synthesis group (ESG).
The NIHR West Midlands ESG gave a presentation on the scoping review it has undertaken for the BSTG on methods and mechanisms to measure and monitor outcomes of newborn blood spot (NBS) screening. This review is the first phase of a 2-phase project. Relevant methods and mechanisms identified in the scoping review will be subsequently evaluated in the second phase of the project.
The West Midlands ESG reviewed research published between 2019 and 2024 that evaluated a current or candidate newborn screening programme, or that reported outcomes in screen-detected cases. Data were extracted from a stratified random sample of 178 eligible primary studies.
BSTG members thanked the presenters and asked a range of detailed questions. Members agreed that the most useful studies were those that compared outcomes between screened and unscreened groups and followed up participants.
The secretariat will meet with the West Midlands ESG in due course to discuss proposals for how to proceed with the second phase of the project.
Survey of BSTG members and updates to terms of reference
BSTG members were asked to complete a survey before the meeting to assess how well the group has been working and to consider updates to its terms of reference.
Members鈥� responses indicated that the role and remit of the group was clear and that its projects have been practical and appropriate.
They also provided a range of constructive feedback and suggestions for improvements which the secretariat will take on board.
In addition, they endorsed amendments to the BSTG鈥檚 terms of reference to reflect the way in which the group has evolved since its formation in 2022.